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From Cancer Patient to Cancer Survivor: Lost in Transition 7 Research The emergence of survivorship research represents a change in focus for cancer research—from a focus largely on cure to one including longer term issues of morbidity and the quality of life of cancer survivors (Aziz, 2002, 2004). This chapter describes survivorship research in terms of its scope, methodologies for its conduct, the challenges it poses to investigators, and available sources of support. The chapter concludes with the committee’s identification of priority areas for research and recommendations for improving what we know about cancer survivors and their health care. SURVIVORSHIP RESEARCH The goal of survivorship research is to understand, and thereby reduce, the adverse effects of cancer diagnosis and treatment and to optimize outcomes for cancer survivors and their families (Aziz, 2002, 2004). Treatment effects, follow-up care, economic sequelae, health disparities, and family and caregiver issues are among the domains of survivorship research (Table 7-1). Survivorship research has in the past decade evolved from small, single-investigator, hypothesis-generating studies relying on convenience samples to interdisciplinary, rigorous tests of interventions through clinical trials. Research efforts have also broadened to begin to examine issues of concern to the full range of cancer survivors, with attention to ethnic and racial minorities, the elderly, rural residents, and those with rare cancers (Aziz, 2004). As Table 7-1 illustrates, a variety of research methods, both qualitative and quantitative, can be applied to this field. The increased
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From Cancer Patient to Cancer Survivor: Lost in Transition TABLE 7-1 Domains of Cancer Survivorship Research Survivorship Research Domain Definition and Potential Research Foci Descriptive and analytic research Documenting for diverse cancer sites the prevalence and incidence of physiologic and psychosocial late effects, second cancers, and their associated risk factors Determining physiologic outcomes of interest, including late and long-term medical effects such as cardiac or endocrine dysfunction, premature menopause, and the effects of other comorbidities on these adverse outcomes Measuring psychosocial outcomes of interest, including the longitudinal evaluation of survivors’ quality of life, coping and resilience, and spiritual growth Intervention research Examining strategies that can prevent or diminish adverse physiologic or psychosocial sequelae of cancer survivorship Elucidating the impact of specific interventions (psychosocial, behavioral, or medical) on subsequent health outcomes or health practices Examination of survivorship sequelae for understudied cancer sites Examining the physiologic, psychosocial, and economic outcomes among survivors of colorectal, head and neck, hematologic, lung, or other understudied sites Follow-up care and surveillance Elucidating whether the timely introduction of optimal treatment strategies can prevent or control late effects Evaluating the effectiveness of follow-up care clinics/programs in detecting recurrence of the index cancer, detecting new primary cancers, and preventing or ameliorating long-term effects of cancer and its treatment, thereby increasing duration of life and quality of life Evaluating alternative surveillance strategies and models of follow-up care for cancer survivors that take into account cultural expectations, patient preference, insurance status, and other factors Developing a consistent, standardized model of service delivery for cancer-related follow-up care across cancer centers and community oncology practices Assessing optimal quality, content, frequency, setting, and provider of follow-up care for survivors Economic sequelae Examining the economic effects of cancer for the survivor and family and the health and quality of life outcomes resulting from diverse patterns of care and service delivery settings
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From Cancer Patient to Cancer Survivor: Lost in Transition Survivorship Research Domain Definition and Potential Research Foci Health disparities Elucidating similarities and differences in the survivorship experience across diverse diagnostic, race, ethnic, gender, and socioeconomic groups Examining the potential role of ethnicity in influencing the quality and length of survival from cancer Family and caregiver issues Exploring the impact of cancer diagnosis in a loved one on the family and the impact of family and caregivers on survivors Instrument development Developing instruments capable of collecting valid data on survivorship outcomes, specifically for survivors beyond the acute cancer treatment period Developing/testing tools to evaluate long-term survivorship outcomes that (1) are sensitive to change, (2) include domains of relevance to long-term survivorship, and (3) will permit comparison of survivors to groups of individuals without a cancer history and/or with other chronic diseases over time Identifying criteria or cutoff scores for qualifying a change in function as being clinically significant SOURCE: Adapted from Aziz and Rowland (2003). sophistication and breadth of survivorship research can be traced largely to a prioritization by the National Cancer Institute (NCI) of survivorship research and the establishment in 1996 of the NCI’s Office of Cancer Survivorship (NCI Director, 2002, 2003; Aziz, 2004). Trends in research publications indicate an increased level of activity within this relatively new discipline (Figure 7-1). Despite the apparent growth in research productivity, the volume of cancer survivorship research is dwarfed by research aimed at cancer treatment (Figure 7-2). The recent emergence of the discipline and the modest levels of research support relative to that available for treatment-related research (see discussion below) may explain some of the difference in research activity. Inherent challenges of the research itself—for example, the need for extended periods of follow-up—may also account for the observed differences (see discussion below).
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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 7-1 PubMed citations for adult cancer survivorship research, 1992–2004. FIGURE 7-2 PubMed citations for adult cancer treatment research, 1992–2004. NOTE: The National Library of Medicine’s PubMed database includes citations from MedLine, HealthStar, and other bibliographic databases. The database stores information about individual citations, including index terms used to characterize each article (articles are indexed according to a dictionary of medical subject headings called MeSH terms). Citations were identified using the MeSH terms “neoplasms” and “survivors,” and keywords (e.g., survivor, survivorship, late effects, long-term effects), excluding citations categorized under the MeSH terms “child,” “adolescent,” “infant,” “child, preschool,” or “pediatrics.” The MeSH heading “survivors” refers to “persons who have experienced a prolonged survival after serious disease or who continue to live with a usually life-threatening condition as well as family members, significant others, or individuals surviving traumatic life events” (NLM, 2004). Citations were limited to those pertaining to “humans” and published in English. There would be an underestimate of survivorship-related citations if the “survivors” MeSH term was not applied by abstractors to the citations or if the title and abstracts of articles varied in their inclusion of keywords. SOURCE: National Library of Medicine’s PubMed database (NLM, 2005).
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From Cancer Patient to Cancer Survivor: Lost in Transition MECHANISMS FOR CONDUCTING RESEARCH Survivorship-related research is often conducted through several mechanisms—clinical trials, cohort studies and analyses of cancer registries, administrative data, and surveys. This section of the chapter briefly describes these research mechanisms. The next section of the chapter enumerates some of the challenges investigators face in conducting survivorship research. Clinical Trials Much has been learned about the late effects of cancer treatment through long-term follow-up of participants enrolled in clinical trials of cancer treatments (Fairclough et al., 1999; Ganz et al., 2003b). In addition, clinical trials are conducted to test interventions to prevent treatment late effects among survivors of adult cancer and to test treatments for late effects (Table 7-2). Many of these survivorship-related trials are supported by the NCI through its Clinical Trials Cooperative Group Program, whose purpose is to develop and conduct large-scale trials in multi-institutional settings. There are currently 12 NCI-supported Cooperative Groups, 11 for adult malignancies and 1 for childhood cancer. This program involves more than 1,700 institutions and enrolls more than 22,000 new patients into cancer treatment clinical trials each year (NCI, 2003b). Cancer clinical trials in the United States have focused on primary treatment, with relatively few trials examining supportive care, and none examining surveillance strategies (Table 7-3). An analysis of NCI-sponsored clinical trials on symptom management from 1987 to 2004 found relatively few trials with a primary end point related to late effects (e.g., hot flashes, cognitive function, osteoporosis) (Buchanan et al., 2005). Most such trials were focused on immediate symptoms of treatment (e.g., cachexia, pain). Relatively few clinical trials have assessed the appropriateness of follow-up strategies for individuals with cancer, and most of them have been conducted in Europe (see Chapter 3). Cohort Studies Cohort studies assess the experience of a group of individuals with a common characteristic, for example, a cancer diagnosis or a particular type of treatment. The cohort may be identified currently and followed up prospectively, or identified retrospectively with subsequent evaluation of health status. Cohorts of individuals with cancer diagnoses have been identified from cancer registries and asked to participate in special studies. Four examples of this approach include the American Cancer Society’s (ACS’s)
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From Cancer Patient to Cancer Survivor: Lost in Transition Study of Cancer Survivors, the NCI’s Prostate Cancer Outcomes Study, the Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE), and studies of the NCI-sponsored Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium. Cohorts may also be identified from patients treated at cancer centers. Two examples of such efforts are the long-term follow-up experience of individuals with Hodgkin’s disease who were treated at Stanford University Medical Center in California and a collaborative study of a cohort of survivors of childhood cancer. Although survivors of childhood cancer are not the focus of this study,1 the cohort study of childhood cancer is described here because it can possibly serve as a model for a comparable study of adult cancer survivors. ACS Study of Cancer Survivors The ACS’s intramural Behavioral Research Center is conducting two surveys of cancer survivors. The first is the Study of Cancer Survivors–I (SCS–I), a longitudinal study of quality of life of adult cancer survivors. Participating survivors complete questionnaires at 1, 2, 5, and 10 years after diagnosis, allowing a comparison of changes over time and an assessment of the long-term impact of cancer on survivors. The study’s sample includes adults diagnosed with 1 of 10 common cancers (breast, prostate, lung, colorectal, bladder, non-Hodgkin’s lymphoma, cutaneous melanoma, kidney, ovarian, and uterine). SCS-I also includes a family caregiver research component to explore the impact of the family’s involvement in cancer care on the quality of life of the cancer survivor and the caregiver. The second survey of cancer survivors is the Study of Cancer Survivors–II (SCS–II), a national cross-sectional study of 2-, 5-, and 10-year cancer survivors that also focuses on quality of life. Survivors of breast, prostate, colorectal, bladder, cutaneous melanoma, and uterine cancer are participating in this study. The results will provide a basis for advocacy and planning by the ACS as well as by other health organizations and agencies. The participants in both studies are selected with the cooperation of state cancer registries from the lists they maintain of people diagnosed with cancer. As of 2005, nearly 10,000 participants had been enrolled in the combined studies. Preliminary analyses of the cross-sectional data have provided information on the quality of life problems faced by survivors. The SCS–II study is expected to complete accrual of participants in the spring of 2005, while SCS–I will continue for several years. 1 For more information on survivors of childhood cancer, see the IOM report Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM, 2003a).
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From Cancer Patient to Cancer Survivor: Lost in Transition TABLE 7-2 Examples of Clinical Trials of Relevance to Survivors of Adult Cancers Topic Trial Sponsor Phasea Preventing the late effects of treatment Sense of taste Zinc sulfate in preventing loss of sense of taste in patients undergoing radiation therapy for head and neck cancer North Central Cancer Treatment Cooperative Group III Bone loss Zoledronate, calcium, and vitamin D in preventing bone loss in women receiving adjuvant chemotherapy for breast cancer Cancer and Leukemia Cooperative Group B III Ovarian failure Goserelin in preventing ovarian failure in women receiving adjuvant chemotherapy for breast cancer Southwest Oncology Cooperative Group III Lymphedema Fibrin sealant in decreasing lymphedema following surgery to remove lymph nodes in patients with cancer of the vulva Gynecologic Oncology Cooperative Group III Treating or ameliorating late effects Peripheral neuropathy Amifostine in treating peripheral neuropathy in patients who have received chemotherapy for gynecologic malignancy Gynecologic Oncology Cooperative Group III Depression Sertraline compared with hypericum perforatum (St. John’s Wort) in treating mild to moderate depression in patients with cancer Comprehensive Cancer Center of Wake Forest University III
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From Cancer Patient to Cancer Survivor: Lost in Transition Neurocognitive function Donepezil and EGb761 in improving neurocognitive function in patients who have previously undergone radiation therapy for primary brain tumor or brain metastases Comprehensive Cancer Center of Wake Forest University II Hot flashes Randomized study of gabapentin for the management of hot flashes in patients with prostate cancer North Central Cancer Treatment Cooperative Group III Sleep Valeriana officinalis (Valerian) for improving sleep in patients with cancer receiving adjuvant therapy North Central Cancer Treatment Cooperative Group III Sexual function Low-dose testosterone in improving libido in post-menopausal female cancer survivors North Central Cancer Treatment Cooperative Group III Fatigue Randomized study of levocarnitine (L-carnitine) for the management of fatigue in cancer patients Eastern Cooperative Oncology Group III Pain Acupuncture for neck and shoulder pain following neck surgery in cancer patients National Center for Complementary and Alternative Medicine III Lymphedema Pycnogenol for the treatment of lymphedema of the arm in breast cancer survivors National Center for Complementary and Alternative Medicine II aPhase I clinical trials generally enroll few people and evaluate how an intervention should be administered (e.g., for drugs, if by mouth, injected into the blood, or injected into the muscle) and the safety of the intervention. Phase II clinical trials continue to test the safety of the intervention, and begin to evaluate how well the intervention works. Phase III clinical trials tend to be large tests of an intervention in comparison to the current standard, usually through random assignment of participants to the standard group or the new group. SOURCE: NCI (2004d).
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From Cancer Patient to Cancer Survivor: Lost in Transition TABLE 7-3 Cancer Clinical Trials Type of Trial Number of Trials Treatment 1,891 Supportive Care 197 Diagnostic 75 Prevention 70 Genetics 33 Screening 23 Total 2,183 SOURCE: NCI (2004d). NOTE: Clinical trials may be categorized as more than one type (e.g., treatment, supportive care, etc.) The total represents the total number of trials, irrespective of the type of trial. The Prostate Cancer Outcomes Study The Prostate Cancer Outcomes Study examined health and quality of life outcomes after prostatectomy or radiotherapy for prostate cancer (Potosky et al., 2000; Potosky et al., 2004; Johnson et al., 2004). For this study, a socioeconomically heterogeneous cohort of more than 1,500 newly diagnosed prostate cancer patients treated in community medical practices was selected from six Surveillance, Epidemiology, and End Results (SEER) cancer registries. Men selected for the study were asked to complete and mail back questionnaires that covered disease-specific and general quality of life, and satisfaction and regret about treatment decisions. Surveys were completed at 6 months and 1, 2, and 5 years after diagnosis. Outpatient medical records were abstracted to obtain information on prostate-specific antigen (PSA) values, Gleason score,2 and details of initial treatment. At 2 and at 5 years of follow-up, important differences in urinary, bowel, and sexual functions were identified by treatment group and by race/ethnicity. This NCI-supported special study is estimated to have cost $7.5 million over the 10-year study period. 2 A Gleason score is obtained through a system of grading prostate cancer cells based on how they look under a microscope. Gleason scores range from 2 to 10 and indicate how likely it is that a tumor will spread. A low Gleason score means the cancer cells are similar to normal prostate cells and are less likely to spread; a high Gleason score means the cancer cells are very different from normal and are more likely to spread.
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From Cancer Patient to Cancer Survivor: Lost in Transition Cancer of the Prostate Strategic Urologic Research Endeavor CaPSURE is an industry-supported national disease registry of more than 11,000 men with prostate cancer accrued at 31 primarily community-based sites across the United States (Cooperberg et al., 2004; CaPSURE, 2005b). The disease registry was founded in 1995. Since then investigators have used it to assess disease management trends, resource utilization, and health and quality of life outcomes (Box 7-1). At each practice site all men with biopsy-proven prostate cancer are invited to join CaPSURE. Clinical information is collected at baseline and each time the patient returns for care. At each clinic visit, the treating urologist completes a progress record, including current disease status, new prostate or unrelated diagnoses, disease signs and symptoms, and changes in medications. At enrollment each patient completes a questionnaire addressing sociodemographic parameters, comorbidities, and health-related quality of life. Every 6 months thereafter patients are asked to complete a follow-up questionnaire to report on their quality of life, health care utilization, and since 1999 their level of satisfaction with care and degree of fear of cancer recurrence. Patients are followed until death or study withdrawal. Cancer Care Outcomes Research and Surveillance The CanCORS Consortium involves eight teams of investigators from around the United States who evaluate the quality of cancer care delivered BOX 7-1 Selected Recent Publications from Research Conducted Using the CaPSURE Database Predicting quality of life after radical prostatectomy: Results from CaPSURE (Hu et al., 2004) Longitudinal assessment of changes in sexual function and bother in patients treated with external beam radiotherapy or brachytherapy, with and without neoadjuvant androgen ablation: Data from CaPSURE (Speight et al., 2004) Watchful waiting and health related quality of life for patients with localized prostate cancer: Data from CaPSURE (Arredondo et al., 2004) Bowel function and bother after treatment for early stage prostate cancer: A longitudinal quality of life analysis from CaPSURE (Litwin et al., 2004) Health related quality of life patterns in patients treated with interstitial prostate brachytherapy for localized prostate cancer: Data from CaPSURE (Downs et al., 2003) Fear of cancer recurrence in patients undergoing definitive treatment for prostate cancer: Results from CaPSURE (Mehta et al., 2003) SOURCE: CaPSURE (2005a).
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From Cancer Patient to Cancer Survivor: Lost in Transition and assess outcomes for approximately 10,000 newly diagnosed patients with lung and colorectal cancer (Ayanian et al., 2004) (Personal communication, A. Potosky, NCI, March 7, 2005). Individuals with cancer identified through cancer registries are being assessed at 4 to 6 months and at 13 months as part of this study sponsored by the NCI and the Department of Veterans Affairs (VA). Longer term follow-up will be possible if additional grant funding is forthcoming. A caregiver supplement is being administered at some sites. CanCORS grantees will receive a total of approximately $34 million over the 5-year study period. The two principal research aims of the consortium are to: (1) determine how the characteristics and beliefs of cancer patients and providers, and the characteristics of health care organizations, influence treatments and outcomes, spanning the continuum of cancer care from diagnosis to recovery or death; and (2) evaluate the effects of specific therapies on patients’ survival, quality of life, and satisfaction with care, supplementing rather than substituting for data from randomized clinical trials (Ayanian et al., 2004). The Stanford Hodgkin’s Disease Experience Between 1960 and 1999, more than 3,000 patients with Hodgkin’s disease were seen, treated, and followed at Stanford University Medical Center (Personal communication, S. Donaldson, Stanford University, January 17, 2005) (Donaldson et al., 1999). This cohort includes patients of all ages and stages of disease and has provided information on the survival, mortality, and morbidity experience related to Hodgkin’s disease over four decades. Evidence of the high risk of cardiovascular late effects of treatment for Hodgkin’s disease emerged in the early 1990s from a special study of the Stanford cohort. Subsequent modifications in patient management and treatment have contributed to a reduction in this serious late effect. Evaluations of the risk of second cancers among this cohort have provided female cancer survivors of Hodgkin’s disease and their clinicians with information on the high risk of post-radiation breast cancer and the need for close surveillance with mammography. The Stanford follow-up program has not had core financial support. The cost of long-term follow-up is substantial and has only been partly offset by grant support. Payment for special studies, tests, and examinations has depended on unstable support. The Childhood Cancer Survivor Study (CCSS) Survivors of childhood cancer face both short- and long-term adverse outcomes as a result of their cancer and its treatment. In the early 1990s, studies of the late effects of childhood cancer were typically limited in
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From Cancer Patient to Cancer Survivor: Lost in Transition BOX 7-6 Active American Cancer Society Cancer Survivorship Grants (Adults) Two psychosocial programs will be compared, one with an educational focus and the other a spiritual focus. The programs’ effects on physical, emotional, social, and spiritual well-being will be assessed among cancer patients who are medically underserved and members of minority populations. Problems faced by younger breast cancer survivors and their partners will be identified and compared to those of older survivors, and a control group of women (acquaintances of the breast cancer survivors). Assessments will be made of the impact of various treatments for prostate cancer on the quality of life of poor white and African-American survivors. Comparison of treatment for chronic myelogenous leukemia on thinking and memory will be made in an effort to develop strategies to improve quality of life after cancer treatment. An assessment will be made of how quality of social support resources affects adjustment among lesbians with breast cancer. A longitudinal study will attempt to distinguish between cause and effect in the search for meaning in life, benefit finding, and quality of life for individuals diagnosed with lung or colorectal cancer. SOURCE: Personal communication, B. Teschendorf, ACS, February 23, 2005. Susan G. Komen Foundation The Susan G. Komen Foundation is dedicated to eradicating breast cancer through research and education. Since its inception in 1982, it has awarded over $144 million through more than 1,000 research grants. In 2003–2004, the Foundation supported five survivorship-related research grants totaling approximately $1.25 million (Komen Foundation, 2004). The projects supported by the grants explore topics such as memory problems, osteoporosis, and other long-term treatment effects; characteristics and needs of Hispanic breast cancer survivors; and outcomes in women diagnosed with breast cancer during pregnancy. Summary Federal investments in cancer survivorship research have been relatively modest. The NCI’s Office of Cancer Survivorship, the federal locus
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From Cancer Patient to Cancer Survivor: Lost in Transition for cancer survivorship research, has distributed an estimated $28 million in research funds to date. The Office of Cancer Survivorship oversees a small grant portfolio and leverages resources from other parts of NIH to encourage survivorship research. Additional support for clinical survivorship research has been available through the NCI’s Clinical Trials Cooperative Group Program, but the level of such support, while difficult to gauge, appears to be low. These groups represent important opportunities to evaluate the consequences of contemporary cancer treatments. CDC’s new focus on survivorship and public health and AHRQ’s focus on cancer among Medicare beneficiaries could lead to increased research support related to cancer survivorship. Other federal support is available for survivorship research through the DoD’s extramural grant programs. In terms of private resources for research, the ACS has invested in large survivorship cohort studies; the Lance Armstrong Foundation is building on its portfolio of survivorship research; and other private foundations are supporting research on survivorship issues relevant to their constituencies. FINDINGS AND RECOMMENDATIONS In summary, cancer survivorship research has emerged as a unique area of inquiry covering areas such as clinical late effects, psychosocial adjustment, and quality of care. The field is by nature interdisciplinary and includes investigators in nursing, clinical medicine, epidemiology, and health services research. Within the past decade, a focus for federally sponsored research has been organized within the NCI. Findings from this research have informed much of this report. Investigators have used several mechanisms to conduct survivorship research, including focus groups and other qualitative methods, clinical trials, cohort studies, cancer registries, administrative data, and surveys. Among the challenges to conducting survivorship research are the difficulties and costs associated with long-term follow-up, the complexities of accruing sufficient sample sizes through multi-institutional research endeavors, changes in treatment and the latency to recognition of late effects, and emerging problems associated with compliance with HIPAA. Survivorship research is funded at relatively modest levels within both public and private sectors, especially as contrasted to levels of support for treatment-related research. Recommendation 10: The National Cancer Institute (NCI), Centers for Disease Control and Prevention (CDC), Agency for Healthcare Research and Quality (AHRQ), Centers for Medicare and Medicaid Services (CMS), Department of Veterans Affairs (VA), private voluntary organizations such as the American Cancer Society (ACS), and private
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From Cancer Patient to Cancer Survivor: Lost in Transition health insurers and plans should increase their support of survivorship research and expand mechanisms for its conduct. New research initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care. Research is especially needed to improve understanding of: Mechanisms of late effects experienced by cancer survivors How to identify and intervene to alleviate symptoms and improve function The prevalence and risk of late effects (prospective, long-term follow-up studies are needed) The cost-effectiveness of alternative models of survivorship care and community-based psychosocial services Post-treatment surveillance strategies and interventions (large clinical trials are needed) Survivors’ and caregivers’ attitudes and preferences regarding outcomes and survivorship care Needs of racial/ethnic groups, residents of rural areas, and other potentially underserved groups Supportive care and rehabilitation programs Interventions to improve quality of life Family and caregiver needs and access to supportive services Mechanisms to reduce financial burdens of survivorship care (e.g., the new Medicare prescription drug benefit should be carefully monitored to evaluate its impact, especially how private plan formularies cover cancer drugs) Employer programs to meet return-to-work needs Approaches to improve health insurance coverage Legal protections afforded cancer survivors through the Americans with Disabilities Act, Family and Medical Leave Act, HIPAA, and other laws Survivorship research methods Barriers to participation Impact of HIPAA Methods to overcome challenges of survivorship research (e.g., methods to adjust for bias introduced by nonparticipation; methods to minimize loss to follow-up) To conduct research in these priority areas, large study populations are needed that represent the diversity of cancer survivors in terms of their type of cancer and treatment as well as their sociodemographic and health care characteristics. Existing research mechanisms need to be fully utilized and expanded to provide opportunities for cancer survivorship research:
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From Cancer Patient to Cancer Survivor: Lost in Transition NCI Cooperative Groups—More long-term follow-up studies need to be conducted of individuals enrolled in clinical trials. SPOREs (P50) or Research Program Projects (P01)—Extramural research mechanisms could be used to support focused research efforts on survivorship. Such mechanisms facilitate interdisciplinary collaboration and take advantage of services and infrastructure available through core institutional support. NCI-sponsored special studies—Additional survivorship special studies are needed that are based on population-based cancer registries. National surveys—Refinements to ongoing national surveys (e.g., the Medical Expenditure Panel Survey) and supplements to others (e.g., National Health Interview Survey) could help capture information on survivorship. Population-based cancer registries—The SEER Program and the NPCR should begin to collect data on cancer recurrence among survivors as an outcome measure. State and regional registries should also develop mechanisms to obtain comorbidity data that can be used to enhance analyses of short-term and long-term outcomes among cancer survivors. Measures of socioeconomic status (e.g., income, education, health insurance status) would assist health services researchers as they assess health care disparities in cancer care and outcomes. These additional data and measures could be obtained through existing linkages with Medicare claims in the SEER-Medicare database, new linkages with electronic data from health plans and provider networks, or an expansion of data elements that are routinely reported by hospitals and physicians to cancer registries. Opportunities should be sought to link data from cancer registries to other administrative databases (e.g., private insurance claims, Medicaid data). Health services research resources—The follow-up period of ongoing cancer health services research studies (e.g., CanCORS) should be extended to yield more information on long-term survivorship. Research networks—Investigators should be encouraged to use existing research networks (e.g., CRN, PBRN, IDSRN) to conduct cancer survivorship research. Longitudinal studies—Longitudinal studies such as the Nurses’ Health Study and the Physician’s Health Study provide opportunities to assess survivorship issues. In addition to harnessing these existing mechanisms, the committee recommends that federal and private research sponsors support a large new research initiative on cancer patient follow-up. Answers to the following basic questions about survivorship care are needed: How frequently should patients be evaluated following their primary cancer therapy? What tests
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From Cancer Patient to Cancer Survivor: Lost in Transition should be included in the follow-up regimen? Who should provide follow-up care? A call for such research was made in the Institute of Medicine’s 1999 Ensuring Quality Cancer Care report, but it has not yet been conducted (IOM, 1999). In some cases large clinical trials will be needed to answer these questions. There is renewed interest in designing affordable and relatively simple practical trials, registries, and other real-world prospective studies to answer the many such clinical questions (Tunis, 2005). During follow-up, the ability to detect cancer recurrence and late effects is usually of great concern to survivors and providers alike. The modalities used for detection are numerous and may be very costly. Cancer patient follow-up typically lasts indefinitely or at least for many years after primary therapy. There is significant and sometimes dramatic variation in follow-up practices (see Chapter 4) and associated costs (Johnson and Virgo, 1997). Much of this variability is currently felt to stem from a lack of high-quality evidence supporting any particular strategy. Gathering such evidence by means of well-designed clinical trials of alternative follow-up strategies is expensive, in part because such trials must incorporate many years of surveillance. The committee concludes that improvements in cancer survivors’ care and quality of life depend on a much expanded research effort. REFERENCES AAMC (American Association of Medical Colleges). 2004. Welcome to the AAMC Project to Monitor and Document the Effects of HIPAA on Research. [Online]. Available: http://services.aamc.org/easurvey/survey/login.cfm [accessed December 9, 2004]. ACoS (American College of Surgeons). 2004. What is the NCDB? [Online]. Available: http://www.facs.org/cancer/ncdb/ncdbabout.html [accessed February 23, 2005]. AHRQ (Agency for Healthcare Research and Quality). 2001. Primary Care Practice-based Research Networks. Rockville, MD: AHRQ. AHRQ. 2002a. Integrated Delivery System Research Network (IDSRN): Field Partnerships to Conduct and Use Research. Fact Sheet. AHRQ Publication No. 03-P00. [Online]. Available: http://www.ahrq.gov/research/idsrn.htm [accessed April 1, 2005]. AHRQ. 2002b. Management of Cancer Symptoms: Pain, Depression, and Fatigue. Summary, Evidence Report/Technology Assessment: Number 61. AHRQ Publication No. 02-E031. [Online]. Available: http://www.ahrq.gov/clinic/epcsums/csympsum.htm [accessed December 21, 2004]. AHRQ. 2004a. Effectiveness of Behavioral Interventions to Modify Physical Activity Behaviors in General Populations and Cancer Patients and Survivors. Evidence Report/Technology Assessment 102. Rockville, MD: AHRQ. AHRQ. 2004b. List of Priority Conditions for Research under Medicare Modernization Act Released. Press Release. [Online]. Available: http://www.ahrq.gov/news/press/pr2004/mmapr.htm [accessed December 17, 2004]. Arredondo SA, Downs TM, Lubeck DP, Pasta DJ, Silva SJ, Wallace KL, Carroll PR. 2004. Watchful waiting and health related quality of life for patients with localized prostate cancer: Data from CaPSURE. J Urol 172(5 Pt 1):1830–1834.
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Representative terms from entire chapter: